New to forums, wondering about long-term PsA outlook

Welcome Greetings and Introductions
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Hi there!

I’m new to the forum and am looking for a little more info on the long-term prognosis for PsA.

A bit about myself: I’m 34, and was diagnosed with PsA about a year ago. I started on Otezla and things have been much better. I’ve had psoriasis since my early 20s, but a few years back I started having a lot of generalized soreness and fatigue. My back, knees, and ribs were the worst. I lived with it, for the most part, and just figured it had to do with my sedentary lifestyle. It started getting pretty bad and just getting out of bed in the morning was a struggle. I tried cutting out certain parts of my diet and exercising more, but that didn’t seem to help the underlying issues (although, generally, it did improve my health). I finally told my doctor, who did some bloodwork and referred me to a rheumatologist. It took my rheumatologist all of 15 minutes to diagnose me with PsA. The only symptoms I wasn’t exhibiting were swollen fingers/toes. He put me on Otezla almost immediately.

Since taking Otezla, I’ve also done more work to lose some weight. The difference after losing 30 pounds and staying on medication has been night and day. I still have occasional flares and I get a little sore when low pressure systems roll through, but mostly I feel normal on a daily basis.

Anyway, I guess I’m wondering about the long-term outlook when living with PsA. I think it was caught fairly early, but my rheumatologist noticed some degeneration of the joints in my hands and my low back between L4 and S1 (which could be unrelated as I have had low-back issues since I was a teen). I have to be careful with my hips and knees, they can be tender. I try to do yoga every day to keep limber. Otherwise, I feel “good” (as good as one could expect, I guess).

So what can I expect as I age? Is this something that will be manageable into my later life, or should I be preparing for it to take over as I get into my 50s and 60s? Frankly, I’m a little afraid of what I’m going to feel like 10 or 20 years from now. I worry about how I’ll handle doing things around the house, or even performing basic tasks in my life. I’m married, but I don’t talk too much to my wife about it as it can sometimes increase my anxiety to dwell on it.

Well anyway, I’m happy to have joined this forum as what I’ve read so far has been very encouraging. It seems to be a positive, supportive group! Thanks in advance for any replies or advice on what to expect in the future.

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Welcome Matt!

It’s great to hear you had a relatively quick and straightforward diagnosis, and are on meds that are managing your PsA well.

Prognosis can be really variable. There are a few studies out there on prognosis from a clinical perspective (i.e. number of joints, CRP etc), but most of these were written well before the impact of the modern DMARDs such as Otezla and the biologics, so exactly what the prognosis will be for those of us who were diagnosed early and got effective medications is hard to say - but I consider myself very lucky to be in that category, and do expect my prognosis to be much better than my dad’s, for example.

When you are reading threads through the site - also remember most of us turn up here looking for help when things are bad, so we are not a representative cross-section of people with PsA.

Having said all that, complacency is not the order of the day - if you keep on top of it through regular monitoring and communications with your doc, then your chances of managing things well into old age are pretty good :grinning:

And finally, it’s truly amazing the full life many of our members live, despite aggressive disease, slow diagnosis, permanent and / or organ damage, and only recently having access to the ‘good’ drugs.

Regardless of what stage you happen to be at in your journey, this is a really supportive place with some great people. Welcome!

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Hello mattbl and welcome! Congratulations on getting diagnosed, losing weight and getting moving! I’ve never really persevered in asking rheumys about long-term prognosis and am fairly happily resigned to the fact that such a thing might require a crystal ball. However getting the disease under the best control possible is the way to go and you seem to be doing all the right things.

I think I’ve had PsA at a low-level for much of my life, diagnosed at 54 when ‘low-level’ turned into a full-on flare. At that age it seemed I still managed to squeeze into the ‘fairly young’ category somehow with doctors but now that I’m 61 I feel I’ve wandered into ‘old’ territory. Anyway, I still climb ladders, lift heavy items, wield a hammer, dig the garden etc. etc. To be fair it often hurts like hell, especially the next day. But I don’t have catastrophic joint damage and I can do stuff. Fatigue is my main bugbear. My own personal prediction is that I’ll damn well keep doing the things I enjoy and need to do until I drop. But, okay, pacing (that horrible word) is a skill I work at. PsA won’t necessarily take you over but by the time you’re in your 50s or 60s you may be adept at negotiating with it.

I’m slowly realising that some degenerative changes don’t mean much in themselves. I have a ton of those. We had a long discussion here recently about imaging and it’s a seriously complex subject. What I took from that was that while the results of imaging can be significant, often they don’t really influence treatment. I think what you’re doing - protecting the vulnerable joints while still using rather than losing - has to be a great strategy.

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Thank you both for your replies!

It certainly makes sense that one can’t predict exactly how PsA will affect you, long-term. I figured that each case is dependent on many variables, but the discussion regarding long-term outlook seems to be absent from most of what I’ve read about the disease. Maybe I’m not looking in the right places, but then again that’s why I decided to join a forum.

Thanks for letting me know that I seem to be on the right track. I guess the key (and challenge) will be continuing good habits into old age. It’s encouraging to hear you’re still active, Sybil! Now that my parents are in their mid-60s, I no longer consider that “old.” :slight_smile: I guess it’s all relative.

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Definitely keep on top of the pain… it can get worse with weather or overdoing it but watch out for constantly giving new reasons for the pain when it doesn’t go back down… it can be really slow… I was like one of those lobsters being boiled not noticing the heat getting too hot because it happens slowly… When your on top of things it’s easier to correct when they happen…

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@Cynthia

I’m not quite grasping your meaning. Are you saying that pain can increase slowly over time in a way that makes it hard to realize it’s coming from the PsA? Definitely something I should be on the lookout for, then.

I’ve certainly noticed that I do not recover from injuries or even just strenuous activity as quickly as I used to. It’s hard to say if it’s just from being in my mid-30s now or if the PsA contributes to that. I feel it must be a combination.

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Yes, I think that’s true. However life expectancy does sometimes get a mention and since the revolution in treatment options it would seem that is barely dented by having PsA.

Oh & I don’t think of myself as old most days (some days I feel very ancient), but in medical terms I reckon a bit too much of the ‘well what do you expect at your age?’ attitude creeps in as we approach or pass 60. Which wasn’t exactly relevant to your discussion but I just fancied a bit of a moan!

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Yeah, it creeps in… you get used to having a little pain so a tiny bit more doesn’t register… but over time the tiny bits add up… I never realised until I could hardly move anymore and started looking back… and then people around me said yeah I noticed you were getting worse I assumed you knew… I didn’t…

It seems like it’s a no brainer that you would notice it… maybe I’m weird that way… but I think if someone warned me I would have been more aware…

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Welcome to the group, and thanks for sharing your journey so far. It sounds like you are totally on top of things, and I’m glad you’re feeling so much better since beginning Otezla. Congratulations too on the life changes you’ve made, especially considering PsA can make life’s activities MUCH more complicated. :slight_smile:

I wanted to comment on something Cynthia said—she nailed it when she said how easy one can miss the subtle changes that PsA can cause over time. For me, the changes were SO subtle/slow. I’m one of those that let things get bad before pushing my Orthopedist and family Dr for some answers/referrals. By then, I could barely walk on my"bad" knee, and I just thought it was hopeless, with progressive OA setting in. My Orthopedist was my true champion and without him, I’d probably still be blaming things on a bad back (from a college injury) and “overall” bad knees from sports. Even now, my current medication isn’t controlling things as it should (I think!!), but since this is my first DMARD, I don’t know how to discern when a change is needed. So be vigilant, but don’t assume the worst is coming either. :slight_smile:

Personally, my best strategy over the years has been to maintain my flexibility more than anything. 20 yrs later (though only getting diagnosed last year), I’m glad I’ve taken it seriously. I often wonder if I’d be much worse off if I wasn’t diligent about exercise/stretching. I keep reading more and more success stories from people who not only pushed for good meds but also stayed active/flexible, so I choose to think it plays a big role.

Welcome again, and I wish you the best of luck.

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Cynthia, I get that too. It’s easy to rationalize it away sometimes. I try to stick to using things that are less subjective to pull my perceptions into line - not how much it hurts, but, Gee, a month or two ago I could walk to the shops easily, now I’m finding it hard.

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Hi, Matt

Welcome to our community. Just a quick comment: in their book Psoriatic Arthritis: The Facts, Chandran & Gladman are unequivocal about how to improve your chances of avoiding the worst that PsA can hit you with: early and aggressive treatment.

We’re glad you’re here. Hope you are too.

Nobody can predict how yours will play out, but the right treatment can improve your chances of escaping the worst.

Sorry I have to run … (as if! I walking is enough of a challenge, but you know what I mean.)

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Thanks @lisarockgirl4. Just knowing that this is PsA has been a big help, but I’m still finding myself doing exactly what you mention - blaming symptoms on something else. I think a lot of it, for me, is just not wanting to admit that it’s the disease and hoping it’s something else; be it soreness from activity, a bump/bruise, etc. Basically, wishing it’s something that will go away on its own rather than something I’ll be dealing with for life.

A theme on this forum seems to be vigilance, which I’m taking to heart. It’s motivating to hear you’ve been doing flexibility work for 20 years! I’m very new into my journey but it’s great to hear from people who have had success (relative success, that is) from maintaining activity.

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@Seenie Thank you, maybe I’ll pick up that book you linked as well. I’m always looking for more information, I think it helps stop me from negatively speculating.

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Yup.

We also believe that early and aggressive treatment is the thing, and we encourage people to advocate for themselves so that they receive the early and aggressive treatment they deserve.

And don’t forget, we love to chat, share and laugh. Every little bit helps.

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The good part for you is early diagnoses. It is hard to say what to expect because it is a case by case kind of thing. Overall, it is certainly possible to live a normal life. It is a good idea to pay attention to your body and routinely have blood work done. Having said that good blood work does not always guarantee that inflammation is not a problem. Do not dread your future. Treatment options have come a long way. One day at a time. Do what you want to do while you can do it. It is not unreasonable to believe you can maintain life as you always have. There are no guarantees however.:slight_smile:

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In life, there never are. :wink:

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Hi mattbl,
I just had to talk about this…it’s so funny how we think we’re “old” when we get into our 30s…oh, how I wish I were 30 years “old”!!! I just had to chuckle at your comment, because I thought I was old at 40 when I got plantar fasciitis…I left it go for quite a while–at least 6 months–before I brought it up to my doctor. I told him how my feet hurt and I just chalked it up to getting old. He almost fell off his chair!!! He said, no, at 40 it is not the norm to have pain, foot pain or otherwise. And, we treated my plantar fasciitis and that got better…
It’s funny how we expect to have pain as we get older. But, really, if people are lucky to not get arthritis (or other disease) of any kind, they can live virtually pain free into their golden years. My dad never had pain until nearly 80 years old and I knew a woman who was way into her 80s before arthritis struck–needless to say her hands at 80 looked way nicer than mine at 50!
I think it is pretty much our condition that causes us to heal slowly or feel crappy after doing things. I walked in the small zoo at Duluth on Wednesday and my feet and legs were so sore for 3 days afterwards it was depressing!
My rheumy once told me with PsA my body’s threshold for tolerating wear and tear would continue to be much lower and aches and pains from just doing simple work, especially anything repetitive, could be expected. And, that’s just how it is. In my case, now that I’m 64, I’m sure degeneration from age is getting to be a factor, but you in your 30s, no I should think not.
So, you’re best off following everyone’s advice and keeping on top of your symptoms. Enbrel has given me better overall health–certainly less fatigue and stiffness. Unfortunately, other concerns keep popping up, unrelated to PsA–or maybe somehow related, IDK.
We can only hope for more good treatments in the forms of better biologics and who knows what else?!
Hang in there, mattbl! Sounds like you have a pretty good handle on things and I’m glad you found this online forum!

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Thanks for the reply. Sure, it’s true I shouldn’t feel “old” in my mid-30s. Admittedly, I did not take care of myself/my body in my 20s so I tend to blame a lot of the way I feel on that… and I shouldn’t necessarily do that. But, mostly I mean that I just don’t heal or recover the way I used to, and I definitely can tell that I’ve lost a few steps compared to how I used to feel. Some of it’s the disease, some of it’s just natural.

There are certainly days where PsA makes me feel pretty down, and sometimes I do feel like I’m much older than I am. I still do take encouragement from some of these posts here, seeing that people who have this disease still live their lives. It’s not always easy, that’s for sure.

My wife and I were just in Superior a week and a half ago! We stopped at the Anchor Bar there.

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Hi Matt,

I’m going with Grandma J on this one - you really shouldn’t notice much difference between your twenties and thirties in terms of recovery and healing - it’s likely almost all PsA.

I didn’t get PsA until I was 36, but it hit me like a truck. As a result, the contrast was pretty obvious (and not just a little scary).

6 weeks before PsA - still bulletproof, operating well on 5-6 hours per night of sleep, no slowing in recovery or healing (even still didn’t really get hangovers…). 6 weeks after PsA, googling wheelchairs. And I certainly could’ve treated my body better in my twenties too!

I guess all I am getting at is that it can be worthwhile to acknowledge a lot of it is the disease, because you’ll most likely find that different strategies are useful in dealing with it, than with straight age-related issues, and the faster you can learn about them and get on with it the better the quality of life you will have :grinning:

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Thanks Jen, I’m going to keep that in mind… and speak to my rheumatologist next visit. I have lots of little aches that I deal with regularly that I am chalking up to anything other than PsA, probably a little bit of denial going on. I also feel so much better than I did prior to treatment so a foot ache or finger ache feels so minor in comparison to the pain I was in before. Makes it easier to write it off or ignore it.